WE’RE BOTH TURNING TO STONE
Twins Zoe and Lucy have a very rare condition
Admiring my reflection in the mirror, I turned to my twin sister Lucy, 26, and smiled. ‘You look lovely!’ she gushed. We were getting ready to go out for dinner.
‘Can you do my hair?’ I called to my husband Mike, 29.
Most women wouldn’t let their hubby anywhere near their hair. But I’m not like most women, and neither is Lucy…
Baffling docs
When we were 5, I broke my elbow jumping off the sofa.
Mum Avril, now 53, and Dad Ian, 52, took me to A&E, where my arm was put in a cast.
Six weeks later, my elbow had healed – but, when doctors removed my cast, I couldn’t straighten my arm. When I tried, I cried out in pain. Bone had fused around the break, locking my elbow. Doctors were baffled. ‘We’ve never seen anything like this before,’ they told our parents, concerned.
So I had tests, saw experts. Because we were twins, Lucy was tested, too. And, three years on, aged 8, we finally had a diagnosis of fibrodysplasia ossificans progressiva (FOP). Sometimes known as stone man syndrome, it means our muscles and other tissues are turning into bone.
‘It’s incredibly rare,’ a doctor told my parents. ‘There are only 800 people in the world with FOP, and only two other sets of twins have it.’ He referred us to Great Ormond Street Hospital in London. But… ‘There’s nothing we can do for them here,’ a specialist told my parents sadly, explaining that, in time, we’d be unable to move at all. Devastated, Mum and Dad decided not to tell us too much. Just little girls, it was too scary. But they did some research, and learned that FOP usually flares up with injuries. Broken bones, even bruises, can cause extra bone growth.
Lucy and I could no longer do PE at school. We couldn’t ride bikes or roller-skate.
‘I want to play with the others,’ I’d say, frustrated.
Mum and Dad encouraged us to draw and paint instead.
Bone had grown on my hip, so I struggled to stand up straight, and sometimes used a wheelchair.
A few months later, our parents explained our condition to us.
‘You need to be careful,’ they told us gently.
Married life
It was still too much to take in, but Lucy and I promised we’d stay safe.
Only, accidents happen. And, when we were 11, Lucy fell and bruised her neck...
A week later, a bony lump had grown there. Unable to lift her arms, Mum had to help her do everything.
The same year, I broke my leg falling off a scooter. And, when the cast came off, my leg was bent at the hip – surgery couldn’t fix it.
I needed my wheelchair more than ever.
Still, Lucy and I continued to live our lives the best we could. When I was 17, I met Mike online. We hit it off, but I was nervous about revealing my condition.
‘It doesn’t matter to me,’ he reassured me.
Romance grew, and, two years later, Mike proposed. ‘Yes!’ I cried.
I was like any other bride planning her big day. And, when it finally came around, determined to walk down the aisle to Mike, I abandoned my wheelchair.
It was agony, but Mike’s grin made the pain worth it.
We settled into married life, and I kept my independence in many ways – doing things like lengthening my make-up brushes so I can still do my face!
I take pride in my how I look, and love to dress up while I can. Lucy feels the same way.
We both know the future is uncertain. Mike and I would
Walking down the aisle was agony – but so worth it
love kids, but there’s a 50 per cent chance our child would have FOP. And we’re not sure how pregnancy would affect me, so it’s not worth the risk. Only Lucy truly understands. When she met her lovely fiance Michael, 27, two years ago, I was over the moon.
Although some FOP sufferers live into their 80s, the average life expectancy is 41.
Lucy and I both know we’ll likely lose more mobility... But life is precious – so we make the most of every moment.
Coping together, side by side, whatever happens next.